Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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I had Rituxan and I feel amazing

Discussion in 'Rituximab: News and Research' started by Rebecca2z, Mar 14, 2015.

  1. Rebecca2z

    Rebecca2z Paradise, Ca

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    I had 3 treatments and one more to go with Rituxan, I am also taking methatrexate and I had very high doses of steroids as a pre-med before the RTX was given and this may be the whole reason I feel so great or maybe a bit of both, but in my weak and frail state I have tolerated the 3 rounds of RTX just fine. I know it is scary to read about some of Rituxan side effects ( My husband read them, I didn't want to know) But the treatments are not bad, they are long however, 7 hours for the first round and 6 hours for round 2 & 3. Maybe this info will help others who want to consider this treatment if ever offered to to CFS patients.

    If this great feeling I am experiencing is from the steroids, I would expect it to fade. But I wanted to share, that after the 3rd round of RTX I felt way stronger and much clearer in my thinking and nowhere near the fatigue. I am not sure what happens next, I am waiting to hear from Stanford doctors, (like do I have follow up Rituxan in the future. )

    I wanted to share this in hopes others can ask their doctors about Rituxan. I shared a more detail story in the introduce yourself if you care to read more.

    I find it is very very hard for me to feel this amazing while I know others are suffering, true suffering that no one does a single thing for.

    I want to scream from the top of the world "HELP THESE PEOPLE WITH CFS " stop discounting them, they are truly suffering.
    Hugs,
    Rebecca
     
    Last edited: Mar 21, 2015
  2. shannah

    shannah Senior Member

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    Thrilled for you Rebecca!

    I love how you wrote about your good news with such sensitivity to those of us still suffering so intensely. Thanks for that. My son is so ill today, he can't even whisper. He's using his hands to try and communicate.

    Where did you have your treatment?

    Best Wishes
     
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  3. Sasha

    Sasha Fine, thank you

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    Wow! Congratulations, :balloons: @Rebecca2z, and thanks for posting. It's great to hear about such a success story.

    We're all fascinated with Rituximab here!
     
  4. Bob

    Bob

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    Last edited: Mar 15, 2015
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  5. Rebecca2z

    Rebecca2z Paradise, Ca

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    Oh Shanna, I am crushed reading about your son and he is why I came in here. I had one thing on my mind after I became well last Wed, and that was I HAVE to tell others who are suffering, I have been so out of the CFS loop for many years and I did so on purpose, that struggle to get help for a disease doctors don't want to hear about and don't believe in was killing me and I was getting no where.

    So when the other autoimmune things came up I thought this is where I will keep the focus and it is only then I got help. I did not and do not want to ever just be happy for me when I know there are so many out here suffering.

    Shanna I know very well about being so weak the voice won't work. I too was whispering just 3 weeks ago in fact. At that level my eyes became very sensitive to light and sound. ( which they have been since the dx was made in 1982 but have gotten much worse over the years and especially bad the last 2 years) It is such an awful awful existence. I hope more people get a response and your son can finally get help.

    I know Bob, envious - I would be too, but then I would think darn this isn't right, I deserve help too, I would fight even harder after reading my story and I hope that is what you turn the envy into. FIGHT Bob, you deserve to have treatment- you deserve to try some things. I was in the very worst place a person could be to try such a big gun like Rituxan, malnourished and on a feeding tube, 35 pounds of weight loss. ( I am unable to eat so the feeding tube which is still in my arm, has to by- pass my stomach completely as food doesn't move through the stomach.

    So if this weak and dying 60 year old can go through 4 rounds of Rituxan I hope others who aren't in such a deteriorated state would be considered to have some kind of treatment.


    Hugs,
    Rebecca
     
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  6. *GG*

    *GG* senior member

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    Just curious how you got this treatment? Study? or?

    GG

    PS What country are you in?
     
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  7. Folk

    Folk Senior Member

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    I'm curious too!
     
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  8. nandixon

    nandixon Senior Member

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    Last edited: Mar 15, 2015
  9. *GG*

    *GG* senior member

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  10. nandixon

    nandixon Senior Member

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    The link I gave takes you directly to the post within that thread that answers your questions.
     
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  11. Rebecca2z

    Rebecca2z Paradise, Ca

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    @ggingues , I am in Northern California. I wasn't in a study, I have an immune doctor at Stanford, who has been watching me get sicker and sicker so he offered for me to try Rituxan, he thought maybe wiping out my B cells might help me. and Boy did it !
     
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  12. Adele

    Adele

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    So happy to read your story @Rebecca2z! :)

    There should be more doctors like that who are willing to try different things off label to help their patients. I really don't understand why there are not more doctors e.g. in Europe who give their patients the option of Rituximab. Of course at their own expense and with the information of possible adverse effects and/or no effect. From what we know now, and with the lack of alternatives, I find it quite strange that adult people are not allowed to make the choice of trying this or not for themselves without traveling around the world.
     
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  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Rebecca2z
    Thank you for bringing your story here regarding treatment that is working for you. I hope you have continued good health.
    Do you have insurance to help pay for this? Bob is in the UK and he and others would likely have to go out of the country to find someone who could do this treatment. Kenny DeMeirleir in Belgium offers treatments but I don't know if he offers Rituximab.

    I'm in Canada and even with insurance there is (presently) no where to go for this type of treatment. Hopefully that will change as stories like yours become known and as others with access try it along with the clinical trials perhaps it will be seen as an effective option among the general medical providers.
     
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  14. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Adele, I so agree, when someone is this sick doctors should be more willing to speculate - which thankfully is what my doctor did.
     
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  15. Misfit Toy

    Misfit Toy Senior Member

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    @Rebecca2z -this is so interesting because my rheumatologist wants me to try Enbrel. He thinks I have a B cell defect. I'm going to my immunologist at the end of March to ask because I actually have very low lymphocytes and low IgG and low IGA so I'm scared to try Enbrel because it can really weaken your immune system and I already have a weak immune system. I know Enbrel is a different drug but with a similarity.

    I also suffer with crushing pain and fatigue. The pain is just awful.

    I am so glad that you are better and I hope it continues. Congratulations and go celebrate!
     
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  16. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Snowdrop Thank You so much for your wishes and kind words. My insurance did pay for this therapy. I was blwon away that they did. I had contacted Genentech in San Francisco about getting financial help and they do offer a ton of help with payment, first you have to have two insurance denials. I signed up for whatever they were offering but my insurance ended up picking up the tab. I believe they have financial help in Canada too. They have a great web site that offers support of all kinds. http://www.genentech-access.com/rituxan-nhl-cll/hcp/find-patient-assistance/co-pay-card
     
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  17. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Misfit Toy, I am sorry to hear you are in that kind of pain, but in my case it was that kind of pain that got me the help I needed. I also have a low IGG, Subclass 4.

    Yes these types of drugs like Enbrel, Methatrexate are scary, but I never gave it a second thought in trying any of them, I was suffering so badly and when the feeding tube came into my life I realized I am not going to survive this. I had to go with the suggestions the doctors brought up. If your kidney/liver is being watched you have better control over something bad happening. With me being so house and bed bound I am not around people much so the chance for me catching something were lower. But I was careful and my husband was careful who he was around.

    I am not able to have any vaccines so he had them and kept his hands extra clean while shopping and such. Any flu or cold I caught I would catch from him. The IVIG has been a life saver for infections in me. I hope you can safely get some help for the pain, that stuff really creates a ton more of fatigue.
     
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  18. Misfit Toy

    Misfit Toy Senior Member

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    Yeah, that's the trick, the very thing I am unable to take...IVIG. I know it's a lifesaver for most and the very thing that put my life in danger.
     
  19. A.B.

    A.B. Senior Member

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    Congratulations! Keep us updated. Fingers crossed for a permanent improvement in health.

    Many of us are eagerly awaiting the results of ongoing or planned Rituximab studies. If positive this will undoubtedly lead to Rituximab being made available to more patients, and hopefully also lead to some diagnostic tests that let us determine who is likely to benefit.

    I'm wondering about these other autoimmune dx that you got and what it means. Do you think that these are manifestations of your CFS, or are they separate?
     
    Last edited: Mar 15, 2015
  20. nandixon

    nandixon Senior Member

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